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HAWMC

With the exception of maybe an insulin pump on our hip, to look at most of us, you would never know that we have diabetes. We may be standing right in front of you, and you may have known us for years, yet barring some extreme circumstance you will only know that diabetes is a part of our life if we choose to share that with you. Let me introduce you to the dumbest secret ever.

Being an advocate for people with diabetes, and increased awareness and understanding of what life is really like with this disease, I’ve become quite outspoken about diabetes. I’ve become outspoken about my own diabetes. I’m proud of our amazing Diabetes Online Community (DOC), and the contributions we make to ultimately improve lives with diabetes, and am honored to be just one of the voices in that chorus.

I get bothered though, because I know we all still try to keep diabetes secret sometimes. We don’t like to bring attention to ourselves in a time of need, show what we often (and mistakenly) translate as being weakness, and have to admit to ourselves that we actually need someone else to help us take care of us, if only for a few moments. I recently wrote about a low at work, and if I hadn’t had low brain and was more comfortable with turning on the billboard with all the flashing lights on it that says, “Diabetes alert, I need a little help please!” then I might could have avoided hours of feeling like my behavior made about as much sense as a Charlie Sheen interview.

I don’t think any of us were taught to share our diabetes like that. Our interactions with people and our condition made aspects of our situation become taboo. Yes, we know that when we feel low we should treat first and ask questions later. But in a world of structure, especially for children with diabetes who have a specific snack time, lunch time, this time and that time, it draws unwanted attention to us when we have to sneak to the back of the room or go to the nurse’s office because our blood sugar is low. Not all people understand that. Not all people with diabetes even understand that. Having to break routine seems like no big deal to the mom & dad of the child with diabetes, because they know how important it is that Junior gets his blood sugar level up before something stupid happens. But they don’t know what Junior has to deal with, the looks he gets from his friends, the questions about where he went and why he gets to have a snack when nobody else does, the lack of being able to explain why he gets special treatment in a way that his peers can accept. To us adults, those are easy questions to answer; to Junior, answering those questions risks not being accepted, and becoming (Heaven forbid!) different.

I lived with diabetes all through those grade school days, and still I don’t know what the solution to this problem is. The only thing I know for certain is that it taught me behavior that I wish I had never learned. We should never, ever feel like we have to hide our diabetes and needs. Yet we do hide it, and that requires us to make a conscious choice to act against instinct when what little bit of clear thinking remaining is what we need to save ourselves from a low blood sugar disaster.

Being diagnosed with diabetes, regardless of type, requires us to retrain ourselves. There are things that we formerly took for granted that we cannot ignore anymore. The more I talk about diabetes to people around me, the more comfortable I get with the idea of sharing what my diabetes needs are. Whatever it takes to get to what we need, we have to remove the barriers, even if those barriers are us.

Today was a day of rewards, a chance to recharge my batteries, and a disconnect from the ever present list of things that need to be done.

The #HAWMC blog post challenge for today is an unstructured “Health Activist Choice.” I’m good with lack of structure. I like being left to my own devices and given free reign to figure things out on my own. It may not be necessarily what I’m supposed to be figuring out, but a little freedom to wander and wonder appeals to the adventurer in me, and I always end up somewhere interesting.

My day today was a lot like that. I got to sleep in a bit, which was nice (and unusual). Having the option to sleep in is one thing that I can appreciate about having an insulin pump. Back in my multiple daily injections (MDI) days, I can remember absolutely HAVING to get up so that I could take my morning insulin dose. It’s nice having options, and something I try to never take for granted.

I got some fun things in the mail that I had ordered, which I wasn’t expecting until next week sometime. Squirt the Cat especially enjoyed giving the package a proper inspecting, and enjoying the delightful smells that it must have picked up along its travels from wherever it came from to our house.

"All your boxes are belong to me!"

Inside were new shorts for summer, which included (free of charge) just a touch of disappointment. Having shifted to a low carb eating lifestyle, I’ve lost a touch more than ten pounds so far, and the shorts I ordered were just slightly too big. Amazing the difference a week makes, back when I ordered the correct size. Oh well, shrink & be merry.

As I’m losing weight and eating low carb, I don’t need as much insulin to keep things level. I’ve decreased my basal rates overall by about 5-10% so far to keep from running too low. Also to prevent over or under correcting for meals, I have to be more accurate in my SWAG (Scientific Wild Ass Guess) bolusing, and estimate the amount of carbs as closely as possible. I’m not following Dr. Bernstein‘s diet specifically (and I admit, I haven’t even finished reading his book yet), but eating low carb definitely agrees with my diabetes. At least, it agrees with my not having post-meal BG spikes, which is great since I hate being high. I’m continuing to make slight adjustments to ward off the lows, so that’s still a work in progress. But honestly, what isn’t a work in progress with diabetes?

The rest of the day I spent with friends watching baseball. Even though both of my teams lost, I still had a great time.

Today reminded me that we need a day every once in awhile (more often if you can get it) to do some things we enjoy. If that is sleeping in, shopping for shorts that sort of fit if you tighten the belt enough, or going to baseball games, it’s important to unplug from all the daily stresses (even diabetes) for a few moments.

I have questions about it every single day. People without it have questions. People who are new to it have questions. Parents of children with it have questions. Everybody wants to know…what’s up with diabetes?

The #HAWMC blog post challenge for today is to “write a poem where every line is a health question.” Because diabetes often has no rhyme or reason, I figure my poem full of questions should be somewhat similar in lack of sense. I tried to put myself in the shoes of someone new to diabetes, and all the questions that must come with being diagnosed, whether you are an independent adult, a parent, or even a child. So here goes…

QUESTIONING DIABETES

What is this thing called diabetes?
And what is with all of these Types?
My doctor says I should be grateful, but why do I still want to gripe?

What is the deal with these numbers?
And what do they all really mean?
I log all this data for everything, but why am I sucking at winning?

Why are my hands so shaky?
And why do I feel awfully drab?
I’m learning that this is low blood sugar, so where are my glucose tabs?!

Why am I peeing near constant?
And why do my thoughts feel like they’re in Jell-O?
If this is what high really feels like, can I just tell it to go on to hell-o?

Does anyone ever get the hang of this?
And will it haunt me the rest of my life?
Or will I be able to do everything I’ve ever dreamed of still…maybe even do it twice?

Today is one of those days that I suck at diabetes. I woke up this morning in a complete fog because of an early morning low. My work was calling wondering where I was, and I vaguely remember talking to my boss and telling her, “Oh crap, I’ll be there as fast as I can.” Fortunately, she’s understanding. A few glucose tabs, a clean shirt and a necktie later, I made it. The rest of the day has been spent trying not to be angry at myself about it.

Today’s #HAWMC blog post challenge is to “leave your health a text or voicemail.” Since I spend all of my money on diabetes supplies, my health is apparently too cheap to pay for voicemail, much less text messaging. I’m just going to have to send it a message in Morse code.

The term “intimacy” is something usually reserved for romantic situations, emotions and secrets best shared in the dark, by candlelight, maybe with Barry White or Marvin Gaye lending their vocal stylings to the mood, and cookies on the nightstand…you know, just in case of a low. However, when I give myself a chance to examine what and why I share about my life with diabetes, I realize that “intimacy” is the perfect word for it.

The #HAWMC blog post challenge for today asks bloggers to reflect on “why you write about your health.” I write to advocate for people with diabetes, for better treatments, and increased awareness. I write to encourage, to show that a positive outlook and an amazing life is still possible even with a death defying disease.

As much passion as I have for other PWD’s living their lives to the absolute fullest, I also write for me. For 28 years I lived my life quietly with diabetes, only really broadcasting it in very close circles of friends and family. Many people who knew me my entire life never knew that I had diabetes.

For the most part with my diabetes, I kept the intricacies of what I feel, experience, get frustrated with, and celebrate to myself. Several years ago while on a bike ride I got the idea for Diabetically Speaking, but it never really got the support to grow much bigger than just an idea; or maybe I was the one that didn’t get the support. Last year, with the encouragement from A-Flizzle and maybe my own desire to finally accept my life with diabetes, I broke through my diabetic wall. I couldn’t take being alone with it anymore. I needed to let my world with diabetes out of the box, out of its cage, out of the proverbial diabetes closet.

I began by following other people with diabetes on Twitter. That was the first time in my life that I really started interacting and sharing intimate details of my life with other people who deal with the same things that I do every single day, who understand how it feels, and know what I really mean when I say, “I’m high” or “I’m low.” The Diabetes Online Community (DOC) helped me find my diabetic voice, and has helped me to stand up for myself and for others with diabetes.

Diabetes is an invisible illness. You may see an insulin pump or a blood test kit, but you don’t see what the person actually lives with. You don’t feel what the person actually lives with.

I write to share my life…OUR LIFE…with diabetes. Our needle pricks. Our nights waking up having sweat through our clothes because of a low. Our embarrassment of having wet a bed while sleeping over at a friends’ house because of a high blood sugar. Our guilt from the burdens we unfairly must place on our friends and families. Our heartbreak at hearing our children say they wish diabetes had never happened to them. Our wishing diabetes had never happened to us.

I write to share my life…OUR LIFE…with diabetes. Our time together at diabetes camp. Our excitement when we hear another insulin pump beep in the wild. Our ability to make a joke at the expense of diabetes. Our incredible diabetes community. Our hopes. Our celebrations when we overcome the challenges that are thrown our way.

I write because OUR diabetes is best managed with the strength of a community behind it.

I had a book of haiku poems once. I think I got it at Barnes and Noble on their clearance rack one day, a total impulse buy. I thought I’d be poignant sometime and feature a haiku in my email signature, in a presentation, or maybe just a simple Facebook status. Alas, it never happened, and I think the book ended up going to the used bookstore for lack of use (and because I get tired of lugging around books I don’t read every time I move to a new place). Kind of kicking myself for that decision now.

Today’s #HAWMC blog post challenge is to write a health haiku. A haiku is a “miniature Japanese poem consisting of 17 syllables – five syllables in first line, seven in second, and five in the last. No rhyme or meter scheme is employed when writing haiku. The aim of the haiku is to create something greater than the sum of the parts.” Oh boy…

Diabetes is
A disease that makes me want
To go a bit mad

No, that’s not quite what I want…

To live with this thing
Is like life with a monster
That is always pissed

I see headlines from time to time touting various ways to “reverse your diabetes” and “cure your diabetes once and for all.” I’m not of the “diabetes is a temporary situation” camp. For Type 2 diabetics, symptoms may subside and you may be able to get off your medications at some point (such as once you lose weight, or adjust your diet and exercise regimen), but your pancreas and insulin producing mechanics never function quite up to normal specs like they used to. Yes, I’m even talking to you Halle Berry and Drew Carey. For Type 1’s, let’s just face it, thinking you can wean yourself off of insulin is effective suicide.

Today’s #HAWMC blog post challenge asks health activists to focus on a “ludicrous headline or cure about your condition.” The intent seems to be for folks to share the ridiculous “cures” for our conditions, laugh, and write a lighthearted post about it. Instead, the more research I did for this post, the more angry I got.

We all dream of a cure, whether we have diabetes, cancer, or foot-in-mouth disorder, and someday there may very well be one. However, we will never be able to outsmart chronic stupidity. Too many people believe everything they read. If it’s on the internet, then it must be true, right? Wrong.

“People are stupid; given proper motivation, almost anyone will believe almost anything. Because people are stupid, they will believe a lie because they want to believe it’s true, or because they are afraid it might be true. People’s heads are full of knowledge, facts, and beliefs, and most of it is false, yet they think it all true. People are stupid; they can only rarely tell the difference between a lie and the truth, and yet they are confident they can, and so are all the easier to fool.”

We as people with diabetes and people with loved ones with diabetes, we all want a cure so bad that we will believe anything that anyone tells us in the off chance that maybe, by some long shot stroke of luck, it just might work. Remember being told when we were diagnosed that there would be a cure in ten years? I do, and that was 30 years ago.

Some would argue with my stance, but I believe that we will get much further in life by learning to live WITH our conditions, rather than fight acceptance of them. Don’t get it twisted, we should absolutely fight the disease or condition, but not our acceptance of it. With diabetes, we cannot possibly give it the attention it requires if we’re too busy living in denial that we have it.

Right now, today, there is no known cure for diabetes. Not for any type of diabetes. That is fact. But there are some amazing treatments, and modern medicine has come a long way in helping those of us with diabetes to live healthy, productive, and amazing lives with the disease. I overcome diabetes every single day, not because I’m cured, but because I refuse to let it overcome me.